Preparing for an Overnight Video EEG

It has been more than a decade since my daughter Kate was diagnosed with RS, and we have become veterans of overnight video EEG monitoring. We have gone through this process at a number of hospitals, and on the whole it is pretty much always the same. For those of you who are headed into the experience for the first time, I share with you some details of our experiences.

Before we leave:

In my experience, it is best to wash her hair thoroughly the night before or the morning of the admission because the adhesive they use to glue on the leads adheres better the less oil there is on the scalp. Remember not to use conditioner! I like to dress Kate in a button down shirt because once the leads are on, it is difficult to get anything over her head.

What to bring:

(1) FOOD I make sure to bring an abundance of snacks from home along with Kate’s sippy cup and a straw. Having all this is a life saver for us. My husband brings us picnic meals because the hospital will only bring a tray for the patient – and if I am eating food from the outside and Kate is stuck with hospital food, then there will be trouble. So we just bring all our own food.

(2) ENTERTAINMENT I make sure to bring our own entertainment. I bring her iPad, a DVD player, DVD’s and books. Don’t forget the chargers and/or power cords!

(3) CLOTHES AND BLANKETS Pack for yourself AND your daughter. I have found that hospital rooms can be cold – so I dress for the cold and I make sure to bring a zip up sweatshirt for Kate. Depending on your hospital, you may get a reclining chair or a cot for yourself to sleep on. I always bring a sleeping bag and pillow for myself. I make sure to bring a blanket and pillow for Kate as well, along with warm socks and a pair of slip on shoes (Crocs are great!). Slip on shoes are great for taking her to the bathroom or taking walks so I don’t have to worry about her socks getting dirty and then getting back in bed with them on. I bring a change of clothes for one day, but I leave bags packed at home in case they decide to keep her for more than one day. That way I can tell my husband: “bring one of the bags that I left packed by the door.” (each bag will be packed with stuff to get us through another 24 hour stay – don’t mean to scare anyone, but a 3 day stay is not really all that unusual, and I would see kids who had been in for 5 days or more!)

(4) SANITIZING WIPES Something I like to do is use sanitizing wipes that I have brought from home to wipe down the room. Sometimes the hospital will give you a big tub of sanitizing wipes, but sometimes not – so I bring my own just to be safe.

(5) MEDS Our hospital requires that the nurses administer Kate all her medications. It might be a good idea to check with the hospital in advance to see if they have the medications you will need in the pharmacy. I always bring Kate’s meds from home because, on occasion, the hospital has not had the exact medication in stock. When this happens, I am able to send our supply from home and the hospital pharmacy will verify the medication and then administer her own.

Getting to the hospital:

We will get an admission time that is usually midday. The first thing we do after registration is go get the EEG electrodes put on the surface of her scalp. This involves the placement of 27 leads on Kate’s head. This takes about 45 minutes. Once the leads are on, they can be isolated from the hair and are bundled in a way that I can still put Kate’s (very long) hair in a braid or ponytail. As you watch them putting on the leads you may think to yourself “would this be easier if her hair was short or shorter?” The answer is “not really.” So suppress your urge to run out and chop your daughter’s hair before the EEG.

Once the leads are on, we either head up to the EEG Monitoring Unit (EMU) or we will get transferred there when a bed becomes available. At one hospital, they put the leads on her while she was in bed after being admitted. But regardless of where the leads get put on, getting the leads glued on is the first step.

Once we are settled in the EMU, Kate is hooked up to the equipment that will monitor the EEG and there is a camera on her that someone is monitoring from another room. Something I like to do once we are settled is use sanitizing wipes that I have brought from home to wipe down the room. I then set up Kate’s entertainment. Usually, by then, Kate is looking for lunch or a snack.

One of the frustrating things about staying in the EMU is how little contact I have with doctors at our hospital. Nurses pop in and out throughout the day and night but doctors come by in the morning and afternoon. So, unless we have visitors, it is just me and Kate sitting in a room by ourselves. She is not really allowed to get “unhooked,” so she is pretty much trapped in the bed the whole time, except when she has to go to the bathroom – and usually the cable connecting her to the monitoring equipment is long enough that we can get her to the bathroom without unhooking her. The only times I have ever convinced the nurses to unhook her so we can escape the room for a few minutes is when our stay has been for multiple days. If we are only there for a 24 hour stay, they are reluctant to unhook her.

Making friends with the nurses is KEY!!! Seriously, if you can bring them food of some kind (a dozen donuts, bagels, pastries of any kind), you will make friends and influence people. This goes a long way to making your stay as pleasant as it can be (which is still a pretty low standard, if you ask me).

Keep in mind that your child cannot be left unsupervised, which probably means that you are going to be stuck in that hospital room for a while. The worst part is when you wake up at 6am after an interrupted night, and you cannot leave the room to get yourself a decent cup of coffee! My husband can never show up too early!

Hospitals will have different visitor policies – and visitors are always a great diversion. But here is where making friends with the nurses works out so well – we always seem to get away with having more visitors than we should!

While the person monitoring the EEG is in another room, there will be a monitor in the room that you could watch – although I have found that some places don’t like to have it on. If you can convince someone to show you what you are looking for on the monitor (what all the squiggly lines mean), it will make your stay much more interesting. I am not saying you will be able to read an EEG as well as a doctor, but you will in the process learn an awful lot about brain activity.

LEAVING:

Once we receive discharge orders, an EEG tech will come up to take the leads off. They currently use a solution that dissolves the glue used to hold the leads in. Once they are done with that, the hospital shampoo cap works quite well to remove more of the glue. After that, I carefully comb a liberal amount of conditioner through Kate’s hair and once we are home, I wash it out. You may notice some leftover gauze in your child’s hair but it will come out eventually.

All hospitals have different policies and procedures. Here is some information from Judy Barrish, RN Blue Bird Circle Rett Center:

1. At the Texas Children’s EMU (Epilepsy Monitoring Unit), the leads are attached in the room so there is no relocating. The rooms are blocked the day before so there is no waiting for one to become available.

2. The cameras in our unit can be adjusted to follow the patient as she moves about the room. Our girls move from the bed to a couch to a bedside chair within the limits of how far the EEG cords will go. The bathroom is not videotaped for privacy, but a parent needs to escort the child...again in case of seizures and/or falls. They can leave the room and go wireless to go to the playroom or in the hallway within the wireless range.

3. Parents provide their own food. A staff member can be arranged to watch the child if there is no one available and parent needs to go get food. Require 1 adult to stay with the child at all times due to seizure risks and associated fall risks.

4. Ours is an isolated unit only for EMU patients and away from the general hospital so it tends to be quieter. Night time vital signs are limited to 1 or 2 checks per night unless there is a medical indication to check them more often.

5. Medications are dependent on the admitting physician. If meds from home are going to be used, they must be brought in the original bottle with a current prescription label from the pharmacy attached. The medications are taken to our pharmacy to be relabeled and returned to the EMU.

6. At the Texas Children’s Hospital EMU, the attending physician rounds every day and that individual is dedicated for the week to support continuity of care. There’s a PA who visits each patient before rounds and with the physician during rounds each day. The Rett Team, Judy Barrish and/or Dr. Glaze make rounds and get an update as to what has happened and plan for continuation of the study, if needed.